INR Irregularities

Hello purple turtle.
I’m in the exact same boat as you. In 2015 a murmur could be heard by my cardiologist and he informed me that I had aortic stenosis. The flaps that control the blood going back to my body’s major artery in the heart was leaking blood. The aorta flap was allowing blood to leak behind the valve.

He sent me to a trauma hospital for emergency surgery. I had to choose between a pig valve or a mechanical valve. I chose the mechanical one because it is said it should last a lifetime. I was in my 30’s. The pig valve has a ten year life expectancy so I opted for the mechanical valve.
Now that I’m a senior a slight murmur has returned but the doctor thinks I’m fine.

The surgery at that time was only open heart surgery. I had the mechanical valve inserted into my heart. It was a serious surgery. After they opened my chest they put me on a heart lung machine that took over my lungs and heart functions.

The surgery lasted quite a while I heard later but it was successful. I was transferred to a cardiac ICU and they kept me there lying down for two weeks.
I’ve been home since but I have to go on Coumadin (a blood thinner) for life.
I get my INR and PT lab tested once a week through a blood draw. (They come to my house).

As far as the variations in INR levels I am all over the place. Sometimes I have to be hospitalized because my levels should be from 2.5 to 3.5. I’m hovering around 1.9 to 2.0 too low which means I could develop brain, heart, and lung, or leg clots. Mechanical valves are a known source of clots sticking to the metal.

My cardiologist adjusts my Coumadin levels weekly. I’ve taken from a pill of 2 up to 7.5 mg a day. I did develop 10 small brain strokes but they were no big deal according to my neurologist. They were tiny.
I hope this comment isn’t too long but once I get started I have a lot to share. Especially if the other person has the same issues.

A recent test showed a 10! Very high concentration and now I’m at risk for bleeding anywhere. IV bag of vitamin K lowered it. It had gone up to 12, a very critical point where brain bleed is a real possibility. They called it Coumadin poisoning. Several days later my level was 1.0 critically low. So I had to take levenox injections to bring my blood level quickly back up. After 10 days I had developed hematomas in my abdomen . 10 places I had injections developed these hematomas. 10 of them . (internal bleeding). I was literally bleeding to death inside my abdomen. It even turned purple like a giant bruise on the outside.

I ended up in-patient for 2 months as they tried to save my life! Finally it was over and I was discharged. These days my INR has been around 2.7. A good range. Wait! It doesn’t end there! During a CT scan they found an aortic valve aneurysm in my aortic artery that was also torn! Not good. If they burst or tear it could quickly become fatal! Another trip to a different hospital ER. The vascular surgeon said “we have to transfer you to a trauma hospital for emergency surgery!” Off I went. The trauma hospital’s CS said that I would have to return to the hospital for a non emergency procedure to repair the aneurysm. “Since it isn’t bleeding the team feels that you are stable enough for discharge. And that was the end of it. So I feel like a walking time bomb because my current CV surgeon said “it could burst but we have ways of dealing with that” then he said “see you next year!! He was clearly annoyed with me and he rushed in and out of the exam room. He took it too lightly in my opinion. I’m looking for a second opinion.
Sorry I know my post was so long. Just scroll away from anything you find irrelevant
Andy

Andy thank you for your post. I felt like I wasn't alone. My surgery was just like yours. I have been recently been diagnosed with 2 aneurysms on my spleen. The vascular surgeon I was sent to said because I am at high risk of bleeding out and the surgery is difficult to recover from. he is going to continue following them to see if they get any larger.
Needless to say I live in constant fear of them ruputuring.
I can relate to the Lovenox injections and heparin iv. I also had brain tumor surgery and
I had an embolism on my kidney that ruptured. I almost bled to death. I was in icu for almost a month. No one could explain why this happened. I never had any kidney issues. Currently my INR levels are supposed to be between 3'-3.5 to prevent another stroke. Like you I have 1. 2, 5 and 7.5mg warfarin that they adjust every week.
I am glad I am not alone with this and am truly sorry that you are going through this. My doctors tell me it is complicated and they don't know why this is happening I bought a tshirt thst says RARE . slowly stumping doctors. I get alot of laughs when I go to the doctors. Sometimes I have to laugh to keep from crying. Thank you again.

I like your T-shirt!
It’s October and I have yet to see a cardiovascular surgeon. I feel like you. I’m a walking time bomb waiting for the day that may never happen or I need surgery It’s frustrating. Doctors are quick and don’t let you talk about your concerns. 10-15 minutes telling me that I’m doing fine.
Even if it’s small, I would like to know.